找到接受:克莱因费尔特综合征的青少年和年轻人如何导航身份,披露和支持
Abigail Tubman1, Jaclyn L Papadakis2,3, Courtney Finlayson4,5
1Graduate Program in Genetic Counseling, Northwestern University, Chicago, Illinois, USA.
Journal of genetic counseling
|June 24, 2025
概括
患有克莱因菲尔特综合征 (KS) 的青少年和年轻成年男性将诊断纳入他们的身份,在披露中找到缓解,并重视各种支持系统. 这有助于管理心理社会福祉.
科学领域:
- 遗传学和内分泌学
- 心理学和行为科学 心理学和行为科学
- 青少年医学 青少年医学
背景情况:
- 克莱因费尔特综合征 (KS) 是一种染色体形 (47,XXY) 症,约发生在1:1600个男婴中.
- 青少年和年轻成年人 (AYA) 的诊断率增加需要了解他们独特的心理社会需求.
- 现有的研究往往忽视了被诊断为KS的AYA的具体经历.
研究的目的:
- 为了探索被诊断患有克莱因费尔特综合征的AYA的心理社会福祉.
- 确定AYA与KS用于应对的资源和支持系统.
- 在这个人群中,为改善心理社会结果提供临床干预信息.
主要方法:
- 定性研究涉及13名参与者,年龄为14-23岁,患有KS.
- 进行了半结构化的个人访谈.
- 使用反射主题分析来分析采访数据.
主要成果:
- 出现了三个关键主题:身份整合,披露经验和支持系统组成.
- 参与者认为KS是他们的身份的一部分,而不是他们的全部,并抵制了污名化.
- 向值得信赖的个人透露信息提供了缓解;来自家人,朋友和合作伙伴的多样化的支持至关重要.
结论:
- 有KS的AYA通过整合他们的诊断来导航身份,而不是采用"残疾人"标签.
- 有效应对涉及选择性披露和强大,多样化的支持网络.
- 这些发现可以指导医疗保健提供者在为患有KS的AYA开发量身定制的心理社会支持.
更多相关视频
相关概念视频
Ethnic Identity within a Larger Culture
98
Adolescents from ethnic minority backgrounds face a multifaceted journey in forming their identities, shaped by the intersections of cultural expectations and personal exploration. For these adolescents, identity formation involves not only typical developmental challenges but also navigating the perceptions and attitudes of the majority culture. As they grow, adolescents in ethnic minority groups often become increasingly aware of stereotypes, social biases, and discrimination, all of which...
98
Erikson's Theory on Socioemotional Development during Adolescence
386
Erik Erikson's fifth stage of psychosocial development, "identity versus role confusion," is crucial during adolescence (ages 12 to 18). In this stage, adolescents face the developmental task of forging a distinct personal identity, a process influenced by social, psychological, and biological changes typical of this period. Adolescents naturally explore different roles, behaviors, and ideologies as they navigate complex questions of self-concept, asking, "Who am I?" and "What is my place in...
386
Influence of Parents and Peers on Identity
143
Adolescence is a pivotal period of identity formation, during which individuals begin to answer questions central to their sense of self, such as "Who am I?" and "Who do I hope to become?" Both parents and peers play critical roles in guiding adolescents through this complex developmental phase.
Parental Influence on Identity Development
Parents serve as primary guides and managers in an adolescent's life, offering support instrumental in decision-making and personal growth....
Parental Influence on Identity Development
Parents serve as primary guides and managers in an adolescent's life, offering support instrumental in decision-making and personal growth....
143
Emerging Adulthood
199
Jeffrey Arnett's concept of emerging adulthood offers a framework to understand the unique developmental stage between adolescence and full-fledged adulthood, generally from ages 18 to 25. This period is marked by extensive exploration and shifts in identity, relationships, and career choices, a process known in psychology as role experimentation. Emerging adulthood reflects the evolving cultural expectations surrounding adulthood and the dynamic process of personal transformation during...
199
Marcia's Theory of Identity Status
436
James Marcia's identity status model provides a framework for understanding how adolescents navigate identity formation through varying degrees of exploration and commitment. Marcia's model builds on Erik Erikson's theories of psychosocial development, focusing specifically on how adolescents reconcile individual aspirations with societal expectations. His model describes identity formation as a dynamic process where adolescents move between different states depending on their level...
436
Self-Evaluation: Self-Enhancement and Self-Verification
5.4K
Social psychologists have documented that feeling good about ourselves and maintaining positive self-esteem is a powerful motivator of human behavior (Tavris & Aronson, 2008). In the United States, members of the predominant culture typically think very highly of themselves and view themselves as good people who are above average on many desirable traits (Ehrlinger, Gilovich, & Ross, 2005). Often, our behavior, attitudes, and beliefs are affected when we experience a threat to our...
5.4K


